What is a good death?  I imagine if I asked ten people this question I’d get ten different answers.  But depending on the cultural context, there are still likely to be common themes.

In an individualistic society like the United States, where personal autonomy is important, a good death is one where we can make our own choices about our final days.

Palliative care focuses on relieving symptoms and improving patient and family quality of life either with or in place of life-extending treatments.  Current approaches to palliative care are largely creatures of the US individualistic cultural context.

What happens when that individualistic society becomes increasingly multicultural?

Racial and ethnic minorities use less palliative care than whites, especially hospice care.   The reasons for this are not clear, but there is some evidence that knowledge, cultural beliefs, and treatment preferences are contributing factors.

Dying well in some cultures may be less about autonomy and more about . . . well, other things.

The US is becoming increasingly diverse (a good thing in my opinion).  If our approaches to palliative care are going to be patient-centered and effective for a wide range of patients we need to learn to communicate transparently with patients and families about care preferences and account for spiritual, religious, familial, and ethnic variation.

What are your thoughts about palliative care? 

. . . to universal health care coverage.

In 2015, the Affordable Care Act provided health coverage for over 11 million people who were previously uninsured.  Despite this apparent success, the Affordable Care Act’s future is uncertain. Whether or not opponents will truly be able to overturn the ACA at some future point, it’s clear that they will continue to put up roadblocks wherever possible.

Bernie Sanders would like to move from the ACA to a single-payer system like Medicare for everyone.  I love lots of things about Bernie Sanders, but this makes me cringe.  Not because I wouldn’t love to see a single-payer system in the U.S. some day – I would – but because it is so clearly unrealistic right now.

But why?  Why did we end up with such massive health care inequalities while other industrialized, democratic countries have universal coverage?  What might have been different in the U.S. today if a different thread or two had been pulled?

A recent article by Dr. Jesse Bump from the Harvard School of Public Health provides some insight.

He looks at the historical context for the development of universal health care in Germany and the UK with the US and its continuing resistance to universal health care as a comparison case. Finland is my ongoing point of comparison and is frequently held up as the poster child for education, family leave policies, and other social programs.  We can learn a lot from Finland.  But it’s a relatively young country in its current configuration (Finland declared independence from the Soviet Union in 1917).

Germany and the UK are more similar to the U.S. historically and culturally.  Each country faced many of the same forces during these times when they moved to universal health care or it was up for discussion – industrialization, the growing economic importance of industrial workers, and the significance of unions. Social upheaval is often a window of opportunity for big change.  In Germany and the UK the result was universal health care, but not in the US.

It wasn’t because the mechanisms for financing and delivering care were different.  Those systems came before decisions about health care expansion and remained basically unchanged after the move to universal health care in Germany and the UK and were were adapted rather than refashioned.

It wasn’t because it was more politicized in the US.  In fact, discussions around universal health care were highly political in all three countries.  That’s not surprising because it involved issues of rights to benefits, responsibilities to pay, and redistributing resources.

Nope. The bottom line was people.  The governments in Germany and the UK expanded social protections because the citizens demanded it.  In the US, workers were suspicious of compulsory health coverage and didn’t want to pay for services they weren’t going to use.  So instead of universal health care there were incremental expansions to Medicare and Medicaid in the 1960s, other attempts at change along the way, and the ACA in 2010.  In this light, it seems that the path in the US toward greater social protection is slower, but maybe not completely derailed. And if we, as the citizens want further expansion, we need to make more noise and vote accordingly.

I’d love to hear your experiences with the ACA or other health care coverage and access experiences from the US and around the world.  That’s bad and good experiences – really, I mean it!  

What do you think people should know? What questions do you have? What would you like to learn more about?

I’ve been thinking a lot about place and space and how that shapes a lot about us, both individually and collectively. When we host students and colleagues from Finland they are struck by how big things are here – from buildings to cars to coffee mugs.  It makes sense I guess that given how much space we have compared to many European countries we would make things bigger.  At the same time, innovative Finnish design makes sense too.  If you have less space, you have more reason to design things that are efficient and functional and if you can make them beautiful at the same time all the better.

There are more insidious effects of place and space too as suggested in a recent article by Stone and colleagues on place as a predictor of health insurance coverage.

This article focuses on the county level in the United States.  That’s where a lot of care for the uninsured and underinsured takes place, but is not as often a focus in research as other levels of geography.

Some key findings:

• A lot of variability in health insurance coverage within counties (ranging from 3% to 53%) as well as between them.
• Lower rates of uninsured in metropolitan areas and counties with more people who have a high school education or more.
• More people without insurance in counties with higher unemployment, more poverty, in metropolitan areas with more Blacks and Hispanics, and in counties where a higher proportion of votes were cast for Republican presidential candidates in the 1008 election.

About that Republican votes thing . . .

I keep coming up against ideology and how fundamental differences in our beliefs about the role of government versus market forces in providing fundamental services to our citizens are roadblocks that seem insurmountable (regardless of which side of the debate you fall on).

Some of us see things like health care and a broad social safety net as a right, something that as a people we should make sure everybody has access to, and that broad access ultimately benefits us all.  Universal insurance coverage and other re-distributive policies make sense from this perspective and are not antithetical to having a strong democratic capitalistic society.

Others of us see those who can’t afford these things as some how lacking in skills, drive, morals, gumption, pick the word of your choice.  The market will provide to those willing to do the work required.  And so of course, investing less in public services makes sense.

I’m sure it’s clear which side of this debate I fall on even if my complete bafflement at the stance of the other guys does not always come through as completely as it might. (Or maybe it comes through loud and clear, but believe me I could be much more outspoken!)

I also realize that there are shades of purple in these arguments.  But still. I am quite sure there are plenty of us on both sides of the debate who regularly engage in a good face palm in utter amazement that the other side can’t see the plain facts staring them right in the face. (And back we go to that Republican vote thing).

Reading this article introduced me to literature on “critical social geography” that I hadn’t come across before or at least not in quite this way. Social geography looks at geographical differences in structure that foster inequities in resources and marginalize populations. Think uneven economic development so that already struggling neighborhoods don’t have any grocery stores. Or public transportation just conveniently not going from here (where there are people who need jobs and are willing to work) to there (where there are employers hiring).

I’ll keep mulling over this place and space stuff, but in the meantime, if you have thoughts on the subject, let me know.

Person-centered care is a current buzz word in health care. In one article, the core of person-centered care is described in this way: “patients are known as persons in context of their own social worlds, listened to, informed, respected, and involved in their care – and their wishes are honored (but not mindlessly enacted) during their health care journey.” In other words, health care is finally catching up to practices that have been at the core of social work for a long time. Huzzah!

I really don’t mean to be flippant or disrespectful. This focus on person-centered care is a good thing in my opinion and is not really new to health care either. There are articles in nursing journals, for example, about person-centered care as far back as the 1950s. But from my seat it’s still an interesting thing to watch unfold. I’m not by any means a neutral, unbiased observer, not only because of my perspective as a social worker, but because (full disclosure) I’m part of a research project funded by the Patient Centered Outcomes Research Initiative (PCORI). And measuring person-centered care and outcomes is, we are discovering, no easy task.

So I was interested to read the 2014 National Healthcare Quality & Disparities Report published by the Agency for Health Research and Quality (AHRQ).  One of the priorities of the National Quality Strategy developed as part of the Affordable Care Act is “person-centered care” defined as “ensuring that each person and family is engaged as partners in their care”. That means health providers need to communicate with patients about their health in meaningful ways, facilitate the patient’s involvement in their own care, and be able to spend the time with the patient that is needed to make these things happen.

The 2014 report includes some data around person-centered care that are interesting, even though they suggest to me that we’re not the only ones finding this measurement issue a challenge. Here’s a summary of some of these data for adults 65 and older (data are available for adults 18 and up as well as for children as reported by parents):

Among adults 65 and older who had a doctor’s office or clinic visit in the 12 months before the interview, 5% reported that their health provider did not:

• listen carefully to them,
• explain things clearly, or
• show respect for what they had to say.

Among those with a usual source of care:

• 4% reported health care providers did not ask them for help making treatment decisions, and
• 7% reported health providers did not spend enough time with them

At the same time:

• Ninety-five percent reported that health care providers explained and provided all treatment options.

It’s not immediately clear from the data how to reconcile these differences. There are data that suggest differences across racial/ethnic groups, by education, and other demographics that may help pull some of this apart, but that’s for another post.  Overall, these data seem pretty positive.

Most hospital patients had good communication with doctors and nurses defined as being treated with courtesy and respect, being listened to carefully, and having things explained clearly. The majority also had good communication about the medications they received in the hospital and about discharge information; however, 10% and 13% respectively did not. One goal of person-centered care is to help patients better manage their own care. Given that medications and post-discharge follow-up are points of difficulty that often lead to re-hospitalization, these are places where we have work to do.

When they first started home health care, the majority of patients were told what care and services they would get and about how to set up their home so they could move around safely. They also had a conversation about their prescription and over-the-counter medications and were asked to show the home health provider all the prescription and over-the-counter medications they were taking (an important step to make sure you know about them all).

In the previous 2 months of home health care, the majority of patients felt that the home health providers were well informed and respectful, treating the patient gently, letting them know when they were going to visit, listening to them and treating them with courtesy.

In terms of involving the patient in their care, however, at least around medications, many fewer patients reported that the home health providers talked with them about the purpose of medications, when to take them, or the potential side effects. In addition, only a quarter (26%) said they got the help or advice they needed when they contacted their home health provider and the majority (93%) reported having some problems with the care they received.

Finally, among hospice patients, the experiences were positive with the majority being referred to hospice at the right time, the patients received the right amount of medicine for pain management, the right amount of help for feelings of anxiety or sadness, and care consistent with their stated end-of-life wishes.

 

 

 

 

I knew I had fallen off the regular posting merry-go-round, but was horrified when I realized that it’s been over a month!  Is it a coincidence that my last post was titled “And so sabbatical ends”?

No, it is not.

I am happy to be back, but reentering the relatively more structured world of teaching, collaborative research projects, meetings, and commuting has required some adjustment.  My empty calendar is suddenly filled with overlapping, multi-colored commitments.  My to-do list expanded from one page to four and continues to grow.  The puppy is confused about having to spend more time alone and not having me at her beck and call when I’m home.  She watches me leave the house with her little brow furrowed.  When I’m home she glues herself to my heels and hauls her 55 pounds of solid muscle into my lap when I’m sitting at my desk.  It’s hard to take a good selfie under those circumstances, let alone get any work done.

But now we’re about a month into the semester and I’m settling into something as close to a routine as it’s possible to have in this job.

And that means the blogging begins again.

A few weeks ago, I went to my first ever writer’s workshop.  It was equal parts terrifying and inspiring. The inspiring part has led me to start working on a book proposal in a more focused way.  (Or maybe that was the terrifying part?)  At any rate, blog posts moving forward will focus even more on nuggets of book-related content (with, I’m sure the occasional tangent ’cause it’s my blog and I can write what I want to).

Upcoming posts will look at workforce issues in elder care, more about caregivers, quality of care including racial/ethnic disparities, and aging-related policy in the U.S.

As always, I welcome your comments, questions, and suggestions.

See you in the funny pages!

 

 

 

Preparation is underway for the 2015 White House Conference on Aging. Now is the time to make our voices heard. The planning committee is inviting input from the public about what issues related to aging are most important. Common themes that are emerging are retirement security, healthy aging, long-term services and supports, and elder justice. In addition to a variety of listening sessions and webinars being held around the country to discuss these themes, you can share your thoughts and experiences at the conference website: http://whitehouseconferenceonaging.gov through the “Get Involved” button.

Below are some of my thoughts related to long-term services and supports that I have shared with the conference planners. What issues do you think are most important?

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I hope that the 2015 White House Conference on Aging will discuss ways to address expected workforce shortages in physical health, behavioral health, and social services for older adults. We know there will be greater need. Even though more people live healthier lives for longer, the sheer number of older adults moving forward will require more health care providers just to maintain the current ratio of providers to the total population. The work force itself is growing older – a wave of retirements in all sectors of health and social services are expected by 2020 leaving an additional gap in providers. This does not even address the need of service providers trained to work specifically with older adults. There are already very few physician assistants, pharmacists, registered nurses, social workers, and doctors who specialize in geriatrics.

Because more people are surviving into old age, health and social service providers are having to deal with more chronic illness for both physical and behavioral health conditions. And yet, the focus remains oriented toward responding to time-limited, acute care problems. As older adults experience this disjuncture between the available care and their need to manage chronic health problems, they become increasingly skeptical of the effectiveness of the health care system to meet their needs. At the same time, proper management of chronic problems is important for preventing more difficult problems down the road.

Despite this need there is a decreasing interest in geriatric work among all health professionals. While students generally agree that geriatric care is an important part of health and social services, they also do not believe that geriatrics offers good career opportunities. Barriers to recruitment and retention include negative perceptions about working with older adults, concerns about physically and emotionally demanding working conditions, and concern about the financial disadvantages of this work.

There are things that we can do to address these concerns, many of which have been highlighted in a 2008 Institute of Medicine report (http://www.iom.edu/Reports/2008/Retooling-for-an-Aging-America-Building-the-Health-Care-Workforce.aspx) as well as by scholars and practitioners across a variety of fields. These include:

• Providing incentives such as loan forgiveness, scholarships, and fellowships for those committing to practice with older adults for a significant period of time.
• Restructuring reimbursements from all payers to provide 1) enhanced reimbursement for services delivered to older adults by practitioners with specific geriatric expertise; 2) reimbursement for medical care management which is a crucial part of dealing with chronic conditions; and 3) Medicare reimbursement for social workers and nurses who work as care managers in many evidence-supported geriatric care models.
• Providing funding for rigorous interdisciplinary training programs.
• Infusing gerontology content throughout curricula and requiring criteria related to working with older adults as part of licensure, certification, and recertification.
• Supporting the development and dissemination of technological advancements as well as the training to integrate these advances into care.

These efforts will address a number of issues. They will offset educational costs for those who specialize in working with older adults. Students often accumulate additional debt for a field that tends to pay less. Similar models have been successful in increasing professionals working with underserved populations in a number of contexts. At the same time, restructuring reimbursements will help address some of this income disparity in geriatric services. Education and licensure reforms will improve professionals’ ability to work in interdisciplinary teams – something that is particularly important for addressing the complex needs of frail older adults – as well as providing all providers some level of training in geriatrics and gerontology. Finally, technology is increasing the effectiveness and efficiency of health care delivery in a variety of ways, but the dissemination of these technologies more broadly and making sure that providers are trained to use them is lagging.

It is imperative that we move forward with work force development now so that we are not scrambling to fill these gaps in the future.